ode_to_fantasy

I've been taking it for years. I consider it my miracle drug. It works wonders =D It's pretty harsh on your stomach at first though...

I'd definitely be concerned at starting at such a high dose. I take 60mg 3 times a day (after building up to it) and still the GI effects are pretty intense (though I'd never stop taking it, because it makes me able to walk!) I also think that the asthma affects that are written about in the side effects are probably for people with Myasthenia Gravis, since that's what the drug was made for, but definitely ask your dr. Best of luck!

A lower dose and tapering up have been very useful to me. I'm up to 60mgs 3 times a day, but every time I taper up, I get the intense stomach cramps and such. But for me, the benefit of the medication far outweighs the bad effects.

My wonderful doctor, Dr. Meador, is moving to Emory University (hospital) in Atlanta from here at the University of Florida and Shands in Gainesville, FL. I'm not sure what he's going to be doing there, but he's the first doctor I've ever had who took my Dysautonomia seriously (and because of him, others have started taking it seriously as well). He's a seizure specialist (Neuro), but I somehow got thrown into his group because someone thought that my constant NCS episodes were seizures. The first time I went to see him, and he saw my HR jump over 30 points and me faint just from standing up, he got so excited, and pulled other doctors in to see if they had any ideas what it was. Then he did lots of research, and came up with a game plan for treating me. If anyone who lives around there can get in to see him, I would seriously recommend it. He's definitely worth the trip, even if you have to go a few hours. I'm just devastated that he's leaving here.

I never really made the connection...but I started having panic attacks when I first started taking Mestinon. I had never had them before, and my doctor didn't think they were actual panic attacks, just that my body was doing something weird and it was freaking me out. They've since gone away. But I still consider Mestinon my miracle drug, and would continue to take it even if I was still having panic attacks and horrible stomach pain :-p

I can only drink coffee when I don't have to do anything that requires functionality that day, as I'll be passing out almost constantly after it, even on the Mestinon! :-p I miss it soooo much....but I'll drink it on a Saturday afternoon if I'm feeling particularly indulgent. :-D

Levsin is an anti-spasmatic prescription that is specifically for GI cramping. It's not over the counter though

Personally, I call Mestinon my "miracle drug". I used to pass out at least every 10 minutes, and since I've started it, I pass out maaaybe once every 2 weeks or so. :-D (it does cause some severe stomach problems at first though, but once I got used to it and started taking Levsin, it got better) :-D

I work in the music industry, I do purchasing for a company that builds equipment for major production companies and concerts and such.

So, we have a camera crew filming a reality show at my company. On one hand, I'm thinking, wow, this is great, this could be some good publicity for Dysautonomia, since I pass out all the time! But on the other hand, I'm thinking, dude, it's not cool to pass out in front of ANYONE, much less a national audience... I hope that, if this show airs, and I am passing out on it (cuz, let's face it, it's way more interesting to watch me pass out than actually do my job) at least Dysautonomia will get some good publicity!

I'm a purchasing manager for an Audio/Visual company. I get to spend money for a living! :-p I sit at a desk in air conditioning all day, and can work from home if I need to.

So tonight I got angry....like furiously angry, and my heartrate shot up to about 220. I'm almost certain that that's the highest it's ever been. It's calmed down a bit now, it's upper 100's, but it kinda scared me. Is this normal? I haven't really had any tachy problems in a while....

I believe I was the most miserable I've ever been when taking beta blockers (toprol xl). I took it for 3 months, thinking that maybe it would get better. My blood pressure, which is usually average (115/70) dropped to the lowest it's ever been before or since. (50/20) and my organs started shutting down...It had gotten steadily worse. I slept the whole time, I could barely crawl out of bed to get the normal things done that I needed to accomplish. They kept changing my dosage thinking it would get better, but it never did. As soon as I stopped taking it, I got immediately better. Not good enough to walk yet, but much better than I had been before. All in all, it was a horrible experience, and I never want to repeat it. Hopefully you'll have a better reaction that I did!

I know this seems a bit drastic to say, but I've been calling Mestinon my "miracle drug". I've tried probably 30-40 random medications to see if MAYBE they would help with my NCS/POTS and I'm allergic to most of them. Then finally, my neuro put me on Mestinon. I haven't blacked out in over a month, whereas before, I literally passed out like every 10-20 minutes! I can walk again, climb stairs, go places without assistance. I know it's different for everyone, but from my own experience, I'd definitely say to give it a try. It did screw with my stomach REALLY bad when I first started taking it. (really bad diarrhea) But after 2 weeks or so, my body adjusted, and I've never been more thankful for any medication, EVER. Best of luck!!

So my doctor finally decided that it would be beneficial (or at least worth a try) for me to start taking Mestion 60mg twice a day. I can't believe it, I CAN WALK AGAIN!!!!!! I am so ecstatic! I haven't passed out in almost a week!! I really hope my body doesn't get used to this one really fast, like it has all the others, because I think I'm in love. <3

Usually my skin starts hurting really bad when I'm extremely dehydrated.... perhaps that could be a reason?

Normally, my Phinergan knocks me out, so I'll break it in half (ask your doctor first), but this usually works for me. Hope you feel better!

I am so ecstatic right now! My boss just told me that I can start working from home!! I love my job, and certainly didn't want to quit, and now an answer has presented itself! Thanks for your support, guys!

I found that Prozac aggravated my POTS symptoms too...I certainly hope you feel better! I know it takes a while for the body to get used to it, so perhaps it will get better within a week or so?

My stress test wasn't actually that bad, I don't think. I only walked on the treadmill for like 2 minutes before I passed out, but passing out while on a moving treadmill is somewhat scarier than normal. They had two people there to catch me and I still almost hit the ground! I was only sick the rest of the day though. Best of luck to you!

So it's getting to be that time of year again here in Florida, where I can barely function because of the heat (and we can't move, because my husband has a 3 year contract with his work left). I have a "full time" job (though I only usually work 30 hours or so, if that), and they're amazing with letting me leave if I'm too sick to work and still letting me keep my health insurance. My problem is that I can't handle working! I love my job, but I can't function well enough to do it properly, and my husband is working tons of overtime trying to make ends meet, and then coming home and taking care of me! I know that a lot of people on this board have to deal with similar issues, but I feel so alone! I don't know what to do! We can't afford to live just on his salary, so I NEED to work. I keep contemplating disability, but it's such a fickle procedure, that it might take years before I actually get approved and such, and that's years without working....which we can't afford. I am...lost.

I've tried pretty much every different type of BC and they all make me drastically worse I'm sorry. I hope it gets better for you!

I would also recommend a teaching hospital or doctors affiliated with one. I've had numerous doctors turn down my case because it's too complicated and they don't know what to do with it, but then I found a university hospital. They actually go out of their way to figure out what's wrong. I've found some amazing doctors who are excited to have a challenge (and what a challenge it is :-p) Best of luck to you!!

I have this "sara-proof" exercise bike that I use (it's really close to the floor, so I can't fall out when I pass out), but the other day I passed out, and slammed my back against the arm. I seriously don't think I've ever had such excruciating pain in my back... And this was with my husband holding my arm! He kept me from hitting my head on anything (I think it caught him off guard). I'm going to the doctor on Monday, hopefully he'll give me something to help with the pain, and make sure I didn't REALLY hurt anything. I've definitely hurt myself before (I pass out like 5-10 times a day, so I always have someone holding my arm or walking next to me), but I don't think I've ever hurt myself this bad before. How do you keep from injuring yourself in your home?? I have a wheelchair to use out in public, but I have a one bedroom apartment, there's no way I can use the chair in there...

I've recently been diagnosed with Fibromyalgia as well. My doctor recommended yoga an hour a day as well as Pilates for an hour a day, then water therapy 2x a week. So far, I've only managed to do the yoga (I don't have money for the water therapy right now) and I'm doing awesome to even be doing an hour of yoga a day without adding the Pilates in there too. I know that yoga, as long as I stay on the ground, has been awesome for calming me down (the meditation part), and for getting in shape. If I leave the ground in any way, I'll pass out, which isn't cool if there are things around to hurt yourself on . Sometimes the yoga seems to aggravate the pain though....I'm only taking Darvocet for the Fibromyalgia right now (which really accomplishes nothing), though I'm going to pain management next week, and my rheumatologist the week after...so I might be on something that actually helps before the month is up. So far, I haven't really found anything that helps with the cognitive problems other than cold air.